Individually We Stand Loosely,
United We Stand Strong!

boy in wheelchair

CEDSA is all about the patient, their family and caregivers, physicians/health care providers, schools and teachers trying to educate people with EDS. We are not your typical organization involved with a medical condition. Many of our staff have EDS. We work very hard to meet or exceed expectations when educating, supporting, and advocating. The word ALLIANCE in our name means exactly that. We reach out to other EDS groups, so we can work together as a team. We want to do everything in our power to help create a better community for those with EDS.

Legislation: Whether it is local, state, or federal legislation that is related to EDS, you will be able to find it on our site. We will be developing a listing of all the states that have issued proclamations for EDS, and if you have had one issued in your state, please let us know so that we can list it on our site. Additionally, please inform CEDSA of legislation that you feel affects people with EDS.

Awareness and advocacy are what we feel the strongest about. Advocacy is a strong feature of CEDSA, and we will be glad to help you with issues related to EDS, from educational to medical. The more we help families, the more they will be able to help others with EDS.

Research is very important to those with Ehlers Danlos Syndrome. CEDSA will help fund research related to a cure for EDS or effective treatments for the debilitating symptoms of EDS. We believe in supporting other research projects for closely related conditions. Searching for a cure for closely related medical conditions may lead to answers about and/or a cure for EDS.

Education is such an important issue for students with EDS, pre-med students, and continuing education for those in the education and medical fields. We will be providing new information to medical professionals and educators. They need to be well informed about the unique nature of EDS, and how the syndrome affects the decision-making processes when ordering tests, equipment, and services.

Support is vital to anyone that suffers from a chronic illness, and EDS is no different. Our motto is: “Individually we stand loosely, united we stand strong” and this is true in support circles. If we help each other, we can learn from one another, and then united we can support others.